It’s Okay That You Can’t Relate

Tales from The Aspie Files: Yesterday afternoon as my daughter and I were pulling into the driveway she said she wanted to play with the neighbor girl, and I reminded her that she had yet to practice her violin for the day. She said she had done it in the morning. As I remember dragging her from bed for an early morning chiropractic appt, I knew this couldn’t be so. “No, no…..at 3 in the morning!”, she responded,”I woke up and couldn’t get back to sleep, so I practiced” (ya, think Yitzhak Perlman with a muter on). “Uh, NO”, I countered, “practicing at 3am does NOT count as a practice for a whole LOT of reasons, not the least of which is I would have HEARD you since your bedroom is next to ours, and if you’re not playing loud enough for someone to hear you in the next room, you’re not practicing with correct technique” (who can’t NOT hear a violin???) “Well you never told me that practicing in the middle of the night wouldn’t count as a real practice, so I didn’t know.” L O N G story short: A story involving me naively thinking that when we pulled into the driveway I had made my point (go me) and that when she trotted off to her bedroom and closed the door, she was going to crank out a legitimate practice. WRONG. WAY wrong (I found that out when I checked on her midway through dinner prep for company coming over). Nope, I lost that one because I hadn’t told her previously it wasn’t acceptable to practice in the middle of the night (without actually producing sound from her instrument). I understand completely that parenting is not about “winning” and “losing”. I get that. But the absurdity of some of the haggling-over-the-minutia that seems to consume many of my waking hours is nothing short of mind boggling.

I posted that story to my FB timeline. I don’t often share autism/Asperger’s related stories on my FB timeline, or in real life for that matter, so this was a bit of a stretch for me. And that got me to wondering, “Why?” “Why don’t I enter into conversations with other mothers or just share some of the funny, ludicrous, and often crazy stories from our family?” It’s not ALL tales of frustration and woe, my husband and I actually spend a GREAT deal of time laughing about some of the stuff that comes out of our daughter’s mouth. She IS funny and she most certainly DOES look at life from a completely different angle.

And then I remembered that since my daughter was a baby many, MANY people (all probably very well intentioned) have explained away her behaviors since she was, well, a baby. It seems that everyone but me could explain away her aversion to lights, looking at me, sounds, movements and changes in schedule. Near-strangers would instantly tell me, “Oh she’s just a normal four year old”, or “Well you know hormones…..” (and she was eight). And I don’t think I’m the only one in this situation. See, here’s what I think happens in the course of human interaction: Person A, who asks how Person B’s kid is doing, really doesn’t give a flip about Person B’s kid, her response or a possible deeper story. Or in some cases, there’s an alternative agenda going on with Person A where they really want to somehow blame Person B for whatever it is that is or is not going on with their child so they barely even truly listen to what Person A says in the first place. But one thing I think I’ve somehow learned over the years is that very few people are truly willing to “be” with you in the moment when you’re responding to a question or trying to share a funny, comical anecdote from your own child rearing experiences. They’re quick to explain everything away as “normal” childhood stuff (as if all their kids can only drink out of one glass, or they can’t put stuff in the plastic recycling bag because they can’t stand the feel of the plastic bag (but they never tell you, so you just think they’re a lazy slob), or one day decide they can’t use toothpaste anymore because the taste repulses them), they judge you for having gotten yourself and your family into this predicament, or they’re really quick to breathe a GIGANTIC sigh of relief that their kid doesn’t act like yours.

But it all sends the same message: “your stories of your wackadoodle family aren’t welcome here”, “We don’t know what to do with you, so don’t even start”. I’m far too much of an extrovert to isolate myself, so I will continue to tell my stories and share our experiences with “safe” people in my life, but I worry about the thousands of other families out there who are getting the same messages that “it’s just not that big of a deal” with whatever it is that’s going on with their child. I worry about those moms and dads out there who don’t have anyone to share some of the things that come out of their child’s mouths and that have faced our similar rejection (my husband’s family made it abundantly clear that WE are to blame for all of my daughter’s idiosyncrasies, misbehaviors, quirks, and socially inappropriate behaviors and want nothing to do with either of our kids). My hope is that everyone out there has at least one place where they can find that person; an on-line forum, a listserv, a person-to-person support group, or a friend who really “gets” it. Someone who gets that living with autism is like living in a hall of mirrors; there are places along the journey that are often comical and downright hilarious, and that where you end up is often FAR, FAR from your version of reality.